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Monday, 23 January 2017

A sleep clinic with a small autistic boy

An estimated 50-90% of autistic people have difficulties with sleep and our six year old son, David, is one of them. A small child who is not aware of danger being up every single night affects the whole family - and most usually me. After trying everything including no blue light, weighted blankets and a year on melatonin, we were referred for a sleep study at Evelina Children’s Hospital at St Thomas & Guys Hospital in London.
The main focus of the study was to look for any reasons for David not being able to sleep or stay asleep. As David is still preverbal he may be having some difficulties he cannot communicate. Our plan was to travel to London Waterloo for 6.30pm on a Sunday evening. We would spend the night and they would try to monitor David's sleep. We would be discharged at 7am the next morning, jump back on a train and I'd take him directly to school.

On the train, David was happy kneeling on a seat and looking out at the buildings. I left nervous - it was going to be a difficult night. When we arrived at Waterloo it was completely dark. David walked well in the station looking up at the boards and the lights but outside it was different and I had to carry him to Waterloo bridge.

London at night was both beautiful and a little scary. David's head flipped left and right as he looked at the sights and I was able to put him down as we approached the hospital.

Here I was surprised. There were a few people at the coffee shop, but hardly anyone else there. As we walked through the departments, there were less and less people and eventually it was just David and I. It felt warm but eerie. David and I loved it. We walked along merrily looking at all the old murals of nursery rhymes and children's stories.

We went through empty corridors and abandoned lifts until we reached a door with a buzzer and a sign that said, "sleep clinic".

"Hello? I've brought David in for the sleep clinic?"

And we were buzzed in.

We walked past a control room and headed down the short corridor to our room.

The two patient rooms each had a hospital bed and a fold down bed on the wall for the parents. There was a large cabinet of electrical things. The rooms were ensuite and there was also a TV/DVD player.

Next to the room was a kitchenette with a kettle, coffee machine and a microwave. There was some tea / coffee / milk and a selection of cereal for the morning. I had played it safe and bought everything we would need for the evening and breakfast - even his own bowl and spoon.

Then the technician talked me through what would happen. We would try to put sensors on David to monitor his body while he slept. The sensors around his chest were to check his breathing and internal systems. There was a CO2 and oxygen reader, something for his pulse and sensors that monitored leg movements.

As I looked at it I felt a mix of dread and hilarity. David had no idea what was going on here. All he knew was that he was going to sleep soon - he'd managed to work that out because he was in his PJs.

The technician said there were head sensors but we didn't need to have them on - it was better to get some data than none if it was going to upset him. As the sensors needed to be glued to his head I was pretty sure this wasn't going to work.

We managed to get some sensors on and then David took them all off. So the technician and I agreed to wait until he fell asleep and then sensor him. The initial sleep consultant had explained to me about different types of sleep and the deepest sleep is probably hit about 20 minutes after you first drift off at night.

So we waited. It took about three hours until David fell asleep. Some people who have autistic children feel a sleep study is too stressful and disruptive. David was not stressed, just distracted. The on call button went on and off, the hospital bed went up and down and the cabinet of flashing lights was examined and poked. Eventually David got over tired and, just this once, I thought it was ok to crawl into bed with him. He fell asleep.

The technician crept in and we got the all sensors added. A plethora of wires ran down the side of my son's body and fed into a connection pad that looked like a version of a game I played when I was a kid called Operation. David stayed in this deep sleep for just under two hours. When he woke up he was confused and ripped the sensors off his body. After realising his stress I helped him remove the sensors so he'd settle again quickly. I was glad we had decided against the glue in his hair. He would have ripped chunks out I think.

The rest of the night was pretty disturbed. The technician was brilliant, patiently waiting until David had fallen asleep again and again. Each time selecting which sensors were needed given the data we had already captured. He re-attached them at least once without even waking me.. probably because I was pretty exhausted.

The next morning, David woke as if his night had been no different to any other. The technician said he had no idea how I was functioning if that's what night's were like. I said, "They aren't usually quite that bad," but I always downplay really how hard it is I think.

I gathered our things and headed out into a busier hospital. It was a bright and beautiful day. Blue skies surrounded the London Eye that poked over the tops of the buildings. I carried David back to the train and dropped him at school. He carried on as if nothing had happened. I was shattered. Now we wait to see if the study reveals anything that can help us all.

You can read all about David and his family’s sleep issues by searching sleep.

Thank you so much for sharing this. This took me back to a similar situation we had ourselves. My little boy aged 4 had his tonsils and adenoids removed and had to have monitors on throughout the first night. He absolutely hated it and we both got no sleep at all. I remember the exhaustion so well. I hope you work it all out <3 #SpectrumSunday

We've just started on melatonin and never even thought about sleep clinics. It sound like you habdled it very well indeed, as did your little dude too. Hurrahs all round! I hope you get an answer soon x #spectrumsunday

I really hope you get some results that can be worked on from David's sleep study. Can I just say that the article is so well written I felt like I was with you both walking down that corridor. Good luck x

They did so well with David and I hope you get some answers. I never realised sleeping was such an issue but I find sleep so interesting generally, would be good to see what happens when we sleep! Sleep studies must give us such a lot of information. Thanks for sharing with #bestandworst x

One thing that strikes me about your story is how great and patient the tech sounds. Was this a place that deals primarily with autistic children? The right personnel can make such a huge difference in times like this. Hope everything turns out OK. #bestandworst

I hope you get some answers. Surviving on limited sleep is such a hard thing to do, especially when it also involves needing to function for your child. I hope the hospital find a way to help David and in turn you as a family get more sleep. I'm so glad you wrote this and shared it with us, I'm sure it will be massively helpful and reassuring to lots of families preparing for similar testing. Sending love from #PosrsFromTheHeart

For others however with breathing troubles, it is an altogether unique issue. It is extremely unsafe in light of the fact that in the event that you quit breathing while you are snoozing, there won't not be quick help accessible and a man could simply pass on in his rest. Sara

What is Autism?It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.

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